Tuesday, March 5, 2013

After Newtown

My Statement to the U.S House of Representatives Committee on Energy and Commerce

On December 14, 2012, two days after I placed my
13-year old son in an acute care mental health hospital, the world
changed. The night of the Sandy Hook
shootings, I wrote a blog post entitled, “Thinking the Unthinkable,” which
included the shocking statement: “I am Adam Lanza’s mother.”

I’m not Adam Lanza’s mother. I’m Michael’s
mother. I love my son. But he—and I—and
other parents and children like us—need help. Like many children with mental
disorders, my son has been diagnosed with several conditions. Michael has taken
a cornucopia of pharmaceuticals to try to control his rages. We have not yet
found a combination of treatments and medications to manage his condition.

When I asked Michael what he wanted me to say to
you, he said, “Tell them I’m not a bad kid. Tell them I want to be well.”

Michael is not a bad kid. Neither are the millions
of other children who have diagnosed mental disorders in this country. And yet we continue to manage mental illness through
the criminal justice system. Too often, the only way loving parents can get
access to much-needed services is by having their children charged with a
crime.

My son Michael entered the juvenile justice system
just one month after his eleventh birthday. While on probation, he received an
array of social services including therapy and psychosocial rehabilitation,
which taught him coping strategies. But once he completed probation, those
services went away.

Before my blog went viral, I thought I was the only
mother in America who was living in this kind of fear. But I learned I’m far
from alone.

Parents like me live in all kinds of fear. We live in fear of
stigma—will my child be bullied for being different? Will my child be a bully? Will
I be blamed for my child’s explosive behavior?

We live in fear of that unpredictable behavior—how
will I know if my child is going to explode? What can I do to keep my other
children and myself safe? What about his school and the community?

We live in fear of the future—what will happen when
my child turns 18? Will my child harm himself or others? How will I pay for all
the services I need to keep my child functioning?

Parents like me are struggling, physically,
emotionally, and financially. And mental illness is still so hard to talk
about, because the stigma—for parents and children—is real. But as long as
parents continue to suffer in silence, the magnitude of this problem will only
be recognized after tragedies like Newtown.
It’s time to talk about mental illness—and it’s time to act.

What do parents like me need from you? We need access
to community-based resources. We need early and consistent behavioral
intervention. We need increased funding
for the Individuals with Disabilities Education Act, as well as funding for
school counselors and behavioral interventionists. We need increased research
funding for effective treatments. And most of all, we need a national
commitment to end the stigma that surrounds mental illness. As long as we keep
treating mentally ill children—and adults—in prisons, it will be difficult for
us to achieve true parity between physical and mental health.

Mental health is truly a bipartisan issue—a problem
that keeps millions of American children and their families from enjoying
“life, liberty, and the pursuit of happiness.” As a nation, we must explore
creative and brave ways to provide a better life for children, families, and
communities.

42 comments:

I too have a son (now 26) with mental health issues. He has had a variety of diagnosis in his life (ADHD, ODD, CD, BiPolar, NOS, Asperger's, Autism, etc.) and was disabled and got SSI. He went to prison (since he was so immature he didn't make good decisions regarding girls) and when he got out two and a half years ago we had to reapply for SSI/DA benefits. Apparently prison cured him of his mental health issues as I am having difficulty proving he is "still" disabled. Sometimes I think it is the moms who should be going nuts on society...thanks for being an advocate for those affected by mental illness. It is TIME for change!rclogr

Thank you for being the face and spokesperson for those of us who have family with mental illness whom we can only procure help for through the criminal "justice" system. The only way for my family to get help for my little brother (26) who was living on the streets and was becoming increasingly violent and disconnected from reality was to turn him in to authorities when he threatened someone. He is now being held indefinitely in Federal Custody with no possibility of bail. After sitting in a cell for months he might finally get treated. I hope that people like you can effect the Change that has to happen in our country. Andee's story really touches my heart. Stay strong, Andee, and you too my dear ASM.

I am a Criminal Defense and Special Education Attorney and am also an adult diagnossed with ADHD. For years I have been writing about the gross over-representation of individuals with ADHD, ODD, Conduct Disorder and other Mental Health Conditions in the Juvenile and Criminal Justice system and in our Jails, compared to their numbers in the general population. This is a huge problem.

I commend the mothers here who have braved the stigma to speak out and ask for help. While none of these disorders represent an excuse or defense to the commission of antisocial and/or criminal acts, they do help us understand where this behavior comes from and why it occurs, so that we can try to prevent it from happening again.

I have dedicated my career to change the current mindset of a penal system that holds more people with mental illness than any psychiatric hospital in the country.

On average, prisoners with mental illness stay incarcerated between 5 and 8 times longer than those without mental illness. They get little or no services or support when they are released. Many recidivize because they are left to their own devices. Systemic change is necessary before this situation can be corrected.

For more information about these issues, please feel free to contact me at rtudisco@edgefoundation.org or listen to one of my series of interviews on Attention Talk Radio at http://www.blogtalkradio.com/attentiontalkradio.

If you want something different to help your son, visit my website at itsadelusion.com. The process is very simple and takes little time. I have a lot of information there about childhood development, but it isn't necessary to even read it. All you need to know is what to do, which is explained in a couple of pages titled "imprinted faces" and "how to/how it works."

I too have a mentally ill son, now age 31. He is living on the streets. He has received a huge variety of "diagnoses" and an even huger variety of medications, to no good effect that I can see. He is occasionally violent, but has so far mostly managed to evade the criminal justice system.

Thank you so much for speaking up on this issue. I am afraid of my kid: he is huge physically, and unpredictable. I have nothing but sympathy and sorrow for Adam Lanza's mom and I would like to not follow in her footsteps.

The common thread I keep finding between these mental health issues, autism etc. is the "cornocopia of drugs" and vaccines. I just watched a 2 hour lecture by Dr. Tent and all of these mental health (and physical health problems, such as Nancy Lanza's autoimmune illnesses)are directly related. Think about it. And please see Dr. Tents lecture. It's on Youtube.

I recently watched a Netflix documentary called "hungry for change". It mentioned niacin therapy for mental illness. Dr. Saul was on this documentary. He and Dr. Hoffer wrote a called "Niacin:The Real Story". There is also an interview between Dr. Mercola and Dr. Saul at the link below. http://www.doctoryourself.com/InterviewNiacin01.pdfIn this article is the following excerpt: "Since Dr. Hoffer founded the Journal of Orthomolecular Medicine in 1968, there have been a very large number of studies that have confirmed niacin not only for treating schizophrenia, but also attention deficit disorder, psychosis in general, anxiety, depression, and obsessive-compulsive disorder. In addition to this, Dr. Hoffer’s work early in the 50s showed as a side effect (I think “side benefit” might be a better phrase) that niacin lowered cholesterol – that is, it lowered the bad cholesterol – and actually raised HDL and dramatically lowered triglycerides." Also I saved this article from Dr. Mercolas website but haven't read it yet: "Why have Antipsychotic Prescriptions in Children Skyrocketed? By Dr. MercolaHope this helps!

Liza, I wrote this to you on Facebook, but figure that is a place you still want to remain private and are probably being inundated. I really wanted to make sure you saw my message though, so here it is again:

Liza, I just wanted to say THANK YOU! Thank you for speaking up about mental illness. I have often wished I could make a difference, but feel like just one small, insignificant person with no voice. Your original article on the day of the shooting spoke right to my heart, and I cry tears right along with you with full understanding of where you are coming from. Our daughter is only 4, but we have known she has bipolar since she was 2. Her biological mother had the same illness, and it cost her her life. Now as I spend every second of every day fighting for the child she left behind and reaching one dead end after another, I fear she will end up sharing the same fate with a system that is so broken and help that is non-existent. I just wanted you to know how much it means to families like ours. Mental disorders can be so isolating because of an unnecessary stigma and ignorance. It's so nice any time you can find another person who "gets it" and even more special when someone is willing to step forward out of the cloak of anonymity to try to help others and make a difference. Our world has a long way to go still, but you need to know that you have already made a difference. Thank you for having the courage to share your story! From one mom to another *hugs*. -Tiffany

Hi Liza,My name is Roger Gietzen. I am a neurologist. I am familiar with the shortcomings of medications, therapy, modern medicine and our society as a whole to provide lasting solutions to the sort of problems you have blogged about.I would love to share with you a short story, that points to a practical solution, that you could apply in your own life with your son. Its too long to post in this comment section, but a quick read. I think you will find it fascinating. If you are interested, email me at: rgietz@hotmail.com and I can attach it in an email.Sincerely,Roger

You know, you have described me as a kid really well... I grew up confused, angry, and not knowing who I truly was. What I have found is that it is often times the people who are trying their hardest to help us who unknowingly make it harder to deal with.

I have been diagnosed with all kinds of disorders and social setbacks, been through abuse that my parents did not even know happened to me and they never realized in a way with their behavior they were telling me the opposite of what I was being told with words. . . It was not something that they were comfortable enough facing to allow me to talk openly about. I have healed immensely since departing and withdrawing a bit from my family, and only now outside the realm of help and what they thought was support, do I realize what has been going on. I bought myself the book "Trapped in the mirror" By Elan Golomb, and decided to start working on myself so that I could stop micromanaging with my own views and just inspire people to change themselves by showing them how im doing it.

I read that book as fast as I could bare it though its contents hurt immensely, and forced myself to shut everything down the second i started getting a headache. I did meditations from this site:http://tunein.com/topic/?TopicId=42413658

As often as I needed, and resisted the thoughts of worry as much as possible. Throwing myself into music, i healed through ditching religion and singing john mayers music for my gospels, kept myself busy with interests instead of what i felt i had to get done. just kept telling myself that nobody would die if i didn't do dishes or laundry, instead taking that time to buy some massage oil with lavender in it and massage my own neck and shoulders during my meditations. i started changing my diet around because we often times forget how important nutrition truly is to mood stabilization and thinking processes.

My psychiatrist that i pay good money for outside of my medicaid insurance services respected my choice to ditch all the pharmaceuticals, and offered me a dietary supplement regimen based on common essentials that we lack in our western civilizations dietary habits nowadays, and after doing some research on this wonderful thing called the internet, i also found another dietary suppliment that I suspect he might not know the benefits of. Here, let me give you the regimen that has been helping to fix my sleep habits, my bipolar / manic depression, and my anorexia, and many other issues and health risks like heart disease and muscular deterioration from our diets.

*Fish oil omega 3 greater than 1000mg*Vitamin D 2000 IU*Vitamin B6 100mg**This is what I added that has helped in a big way:*L-Tryptophan this must be taken with the B6 for absorption.

Also, he did mention to me a different kind of medication that I did try out for a while that might help for someone younger and more out of touch with their problem, as your son is. Research *Remeron / Mirtazipine. It is a very soothing medication to take and it has seemingly less side effects than the SSRI's and MMAOI's that they were placing me on. I find it within my rights now to say that I honestly feel like we over medicate for things that could be fixed just simply by making a few progressive changes in our lives.

Now, I know better than anybody that making many little changes to a routine all at once can be overwhelming and painful, but I like to look at it this way, it's like getting a diseased organ taken out so that it doesnt poison your body and kill you, the longer you wait the more serious it gets. Because this is obviously a very dangerous road that we are on, and I stand by my belief that the way we best help the people around us is by helping ourselves and paying attention to ourselves.

A lot of my anger and morbid thoughts came from my dreams, I highly recommend that you look into dream interpretation for your son, and though it will be hard, train yourself on how to interpret them and in turn teach him how to REMEMBER them after waking up, have a pen and paper by the bed and write down everything he can remember and just be patient this takes time and lots of practice. that is a hard one that i still struggle with.

it takes work. But the night terrors I have had all my life caused me to make some grave mistakes and almost get some beloved family put in prison for things that didn't actually happen. The night terrors can replace memories, and that is when it gets scary. that is when our realities are challenged, and when unfortunate and extremely preventable tragedies like this occur. . .

Only in banding together and working together can we overcome these things. But i promise you if we rally with this as a community, it can happen. I have found that becoming an activist has helped me find out more about my own past, things that i just accepted as normal but now realize they were detrimental, and keyfactors in my behavior. in helping others and learning through others we find a lot of answers of our own. The answer lies in facing the age of narcissism that we have unfortunately grown all too accustomed to. and it changes your view on everything in the world but its worth it, and its definitely how change happens.

The best thing to do is face that kids today have lost touch of their sense of selves and its our jobs to help them find it, to help them find their voice again. it sounds to me like your son is dealing with some pretty scary introjects in his own mind right now, and when things come to such a fear filled situation the time has come to take it ever so seriously and no matte how much pain facing our own problems brings us we must face it for their sakes. <3

Also I learned a lot about myself from a kids movie, The rise of the guardians. Now I can't help but to think that someday during my homeschooling I am going to have movie nights with films like this, with family discussions afterwards using the characters to apply it to their lives, because kids think in analogy. The internet can be a wonderful wonderful tool for parents. keep that in mind. just be careful and double check EVERYTHING you read. Don't just believe everything you find on the internet. Not everyone who smiles at you is your friend.

Thank you again for all the adoptive parents who face what you do on top of being told they are not REAL parents so caused this. The damage to families facing multiple stigma ,financial drains and social isolation is huge. It is a rare parent who has their wits holding together enough to speak cogently let alone so forcefully. Thank you.

Liza, I am on the programming committee for TEDxSanAntonio. We are an official TEDx event, held in beautiful San Antonio, Texas. We were brainstorming for TEDx speakers to apply to speak at our event on Saturday, 10/12/13 and you were at the top of our list! To learn more about TED in general, visit ted.com. I'm happy to correspond more directly about our desire to have you apply (cell 210-710-4812 or work email at helterbrandr@claritycgc.org)for our local TEDx event and hope we can establish a dialogue.

Since there are so few comments this time, I feel this one might actually be read. A book needs to be compiled from the comments on your prior article. There was a huge amount of helpful information provided. I will be glad to provide you with my full comment and an acupuncture protocol cure for chronic mental disease. The protocol was discovered by Sun Si Miao, a physician who is honored as the "Medicine God of China". It works. I used it to get well myself. Contact me at anncgm1@gmail.com

Mental illness can and will be ended when we take the steps to end it. We already have all of the knowledge, but the knowledge isn't being utilized by Allopathic Physicians.

Sorry, I transposed my other seldom used email address in my post, so here goes again. Since there are so few comments this time, I feel this one might actually be read. A book needs to be compiled from the comments on your prior article. There was a huge amount of helpful information provided. I will be glad to provide you with my full comment and an acupuncture protocol cure for chronic mental disease. The protocol was discovered by Sun Si Miao, a physician who is honored as the "Medicine God of China". It works. I used it to get well myself. Contact me at anngcm1@gmail.com

Mental illness can and will be ended when we take the steps to end it. We already have all of the knowledge, but the knowledge isn't being utilized by Allopathic Physicians.

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Having grown up with a paranoid Schizophrenic father, my first 9 years of life, (my Mother finally left him, with 5 kids in tow, to another community), and now being an adult, looking back....I truly wish there had been Alternative Medicine/Healers available to us all, as a family.

My childhood innocence, as well as that of my brothers and sisters, were all wiped/warped away with the events we witnessed, experienced at home. We had no extended family or friends that helped. Medication, ambulance attendants, hospitals were the norm, back in the 1970's.

Being the youngest child, I was severely traumatized, and suffered abuse over and over and over again....the toll has affected me, even now, in my late 40's, still haunted. For me, years of self-healing have been necessary, to achieve inner peace, and reclaim my power/self-respect back. Talk therapy was limited, and I've never used pharma drugs for emotional issues. Alternative energy medicine, Homeopathy, herbs, supplements, gluten-free diet, craniosacral massage therapy, chi gong, some accupuncture, have been my mainstay.

Having two children of my own, I have been preventative with all of our healthcare, by using Alternative Medicine/Therapies. Neither of my children were vaccinated either, as it is voluntary here in Canada. We researched, and informed consent was not to vaccinate, what with our family history of mental health issues, food sensitivities. When they were babies, Craniosacral Massage therapy, primarily the skull is focused on, was very helpful. Naturopaths and Homeopaths and Electrodermal skin testing (computer system)for food allergies, parasites, metal toxins etc were also very helpful.

I have been using Homeopathy, a natural system that a German Doctor invented over one hundred years ago, for over 15 years now, with great success. When my kids were toddlers, when given the right remedy, I saw immediate improvement, literally behavioural change in 5 minutes. They are not sugar pills, no placebo effect, as I have used Homeopathy for my dogs, fish, guinea pigs, birds etc...and all improved.

I would strongly suggest you check out a Naturopath/Homeopath, energy healers in your area--ask for references, as I've found some are not as good as they claim to be--personal choice, obviously.

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I have a 20 year old brother (17 years my jr) who struggles with mental illness. Your story resonated with me, well...because in many ways it's much like our story. Countless numbers of inpatient commitments (only 2 voluntarily), and countless hours of floor pacing and hand wringing.

I truly feel your pain. I'm at a loss as how to convey the extent, but I feel it nonetheless. But I'd like to share a bit of hope. My brother is now somewhat stable. He began Risperdone and has shown a marked improvement. Of course, he is also closing in on his 21st birthday, so this may also factor in. I can't help but feel all his adolescent hormones and strife helped contribute to his condition.

I used to fear him. Tremendously. Now, though, I am not as scared. It's been a long journey with much more to go, but we're getting there. :) And you will too.

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There is so much I could say to your heart breaking posts but I think brevity is of the essence so I shall keep this short.

I am your son at 45, except I had no diagnosis, no help until I was 38. From 6 or 7 when I started showing symptoms of what would much later be called bipolar disorder (primarily flip of the switch unfocused irrational rages) until my diagnosis I simply assumed I was bad and hopelessly broken, unfixable. It's no way to live. In fact, it's hard to not cry when I think of how things used to be.

Fast forward to today. Thanks to skilled medical professionals and several powerful psychoactive chemicals I have been basically symptom free for 4 years now. I am in love with a wonderful woman, own a house and am employed in a manner commensurate with my abilities.

I just want to let you know you are doing God's work (though I am not a believer). There are remedies. Sometimes finding them is difficult, but you will get there.

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I found your blog after reading this article elsewhere online. First of all, thank you, thank you, THANK YOU, for having the courage to shine light on these issues in such a manner, and with such eloquence.

Also...at the risk of being just another idiot who sounds like she thinks she knows better than you do, I wanted to send you something that I thought of when reading what you wrote:

http://www.afterpsychotherapy.com/empathy-for-the-psychopath/

I know it's not psychopathy that your son has been diagnosed with, but I still think you might find some resonance in what this doctor is talking about. I hope this may help you.

I hope that you have a chance to read this, although it's waaaay outdated! I work with gifted students, and I am wondering how much infomation you've been given regarding the issues and regarding highly gifted children. If you are interested in learning about some of the strategies to help kids who are highly intelligent, I would be so happy to give you some information. My email is kimdparis@gmail.comI cannot begin to imagine what your life is like, at times, in dealing not only with your oldest child, but also with your other kids who are also probably of above average intelligence! I can only hope that you've been given lots of information about the characteristics these kids exhibit so that you have been able to respond to their academic, social and emotional needs in a way that not only helps them but also keeps you somewhat sane!

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I just saw your interview on CNN. I suffered for 13 years with a 250lb violent paranoid schizophrenic parent. My mother was one of the many locked up in an institution, but was released when they were forced to close in the early 1970s.

I was 3 years old.

When she came home she heard me call my caregiver "mom", grabbed a frying pan and chased the woman out of the house and down the street. My father got a call from a payphone that my mother was going to hurt me. He came home, dragged me screaming out from under a bed. A few days later I was in a medical facility with dislocations, fractures, concussion - and she admitted she did it, to teach me not to run from her.

There were no laws then to save me, so she went home, then I went home, and thus started 13 years of hell until I could emancipate myself. I begged for help for years, but there was no way for me, as a child, to get my mother locked up even when her being home was a daily test of survival for me.

As an adult, I still suffer from PTSD and other survivor issues. It infuriates me that the discussion is always about guns or weapons or whatever else, and never about the root cause - the mental illnesses that are destroying peoples' futures and tearing families apart.

I hope that the publicity you are bringing to the subject has some impact. In the 80s when I went to college I gave talks at my school about mental illness and child abuse survivorship. We need to keep up the fight and hope one day they can get the help they need - to prevent more incidents like the ones you mention, or those like me - I never made headlines, but suffer all the same.

I just watched the PBS documentary that you so graciously gave an interview. I applaud your courage to speak out, it is the only way we will get support and if enough voices raise, perhaps change for treating mental illness.I, like you, posted a commentary on My Autism Team site that Adam Lanza could have been my Son, and at first got backlash comments and then other Parents posted commentary that their Sons were violent and out of control and often obsessed with guns.We found help for our 15 year old at a therapeutic school called Wediko in Windsor NH. After 3 hospitalizations in a year and increasing explosive behavior...and bringing an air gun to school, we hired a Special Ed Atty and our district placed him there. A beautiful place with compassionate therapists and teachers in a small 35-50 student population of boys. After 2 years our Son has expanded his pragmatic speech helping him to connect and develop friendships, enhanced his self confidence and control his outbursts and is calm to be around.

We have 5 children, 3 of which have mental illness and have also found NAMI and those families to be a tremendous support who guided us to get each the unique support they needed to be productive independent adults.My best regards to you and your family and hope this was helpful.

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About Me

Liza Long, aka the Anarchist Soccer Mom, is a writer, educator, mental health advocate, and mother of four children. She loves her Steinway, her husband, her kids,and her day job, not necessarily in that order. Her book "The Price of Silence: A Mom's Perspective on Mental Illness" from Hudson Street Press is available in bookstores and online. The views expressed on this blog are entirely her own and in no way reflect the views of her employer (or anyone else, for that matter).